I've never been on the cyclosporine.The only thing I've heard about it is to watch for infections and not to take it with grapefruit for some reason.

I've had severe poly for 15 years and have slowly but surely lost strength everywhere.The meds seem to do nothing to alter it's course.I been on prednisone for 12 years and mxt for about 7 years.

I also developed steriod myopathy when I was put on 80 mgs of prednisone.My teeth are effected by 30 years of sjogren's and the resulting dry mouth.

I also developed high blood pressure but the weirdiest thing happened,after having the flu and bronchitis,my blood pressures has dropped.The doctor thought I was dehydrated but it has stayed low.

It's good to be back home on our website, isn't it? I hope that your flare has subsided.

I chose not to accept Prednisone when I was dx with IBM. That was in August 1991. I think I did right in that decision. IBM is bad enough w/o all the side effects of Prednisone.

It's good to have you online again. As you have noticed, we've grown in size on the website - but still have the best people in the world as our support team.

It's good to be back home on our website, isn't it? I hope that your flare has subsided.

I chose not to accept Prednisone when I was dx with IBM. That was in August 1991. I think I did right in that decision. IBM is bad enough w/o all the side effects of Prednisone.

It's good to have you online again. As you have noticed, we've grown in size on the website - but still have the best people in the world as our support team.

Welcome to our Myositis website. (Your other two posts came through alright.)

I was diagnosed (finally) in August 1991 with IBM. Because of a previous horrible experience with Prednisone, I refused to take it. I have never taken anything for IBM. I do take medication for the pain that IBM causes in my feet and legs at night.

Most experiences I've heard from those taking Prednisone at the beginning, it is relatively short lived (a few years, at best) and then it's effectiveness wanes.

I'm sure your physician told you there are few medications to help IBM patients. IVIg has helped a few for a short time, but it is very, very expensive. Both Prednisone and Metx. have their side effects which often bring on more problems than any help.

Please feel free to post any messages - or to answer to previous messages. This is the most friendliest Myositis internet website.

Already outgrowing by leaps and bounds, the webmaster will be installing another bulletin board program that will allow us to have 10 bulletin boards from this one site which no other Myositis group has.

When he completes all the installation, all the goodies connected and added, our group will have the greatest website for the greatest group in the world.

Welcome, Richard, from me and the entire group.

I have posted several messages on the MAA Board about my theory that some of us IBM's had our disease activated by takig one or more of the drugs used to treat high levels of chloresterol and triglicerides. Have received about six comments saying that they had.PLEASE EMAIL ME IF YOU HAVE!!!

Let us hear from you more often so we will know how you are handling the IBM.

Welcome...I don't have IBM, so I can't help you there, but as far as your problem with posting....After you post a message, go back to the bulletin board page and click on the third bar down, over on the left to "Reload Forum". This is the only way that you will be able to see your message. Sometimes, when I've been scanning the bulletin board for a while, I have to click on "reload" to see any new post others may have made.

I'm glad you used your name; it was getting confusing because we were getting name confusion, not really knowing which "Jan" we were referring to.

I have a tremendous question to make. Can you re-write the exact posting you sent 3/24/01 - ONLY - CHANGING THE TOPIC.

I feel that your message is so important and since the original posting was actually a sub-posting, the Topic Name should be a grabber - like "Your Help Is Needed" or something like that.

This will bring more immediate attention. The posting of today was a sub-post message way down the list, several days ago; most likely wouldn't be noticed.

I sure thank you and I will offer any help I can for you.

I've been thinking about a topic subject. How does "IBM - Need IBM Help"

This way, only IBMers will answer your questions, etc. "Directly from the horse's mouth," as we say in East Texas.

I'm new to the group also... keep in touch and let us know how you are coming along. I finally have an appointment to see a specialist next week. Keep the faith!